I’ not sure whether I should laugh or cry. I have, finally confirmed, lupus. On my Polish blog, I had some texts about lupus. Why it could be the cause of stroke, or why I suspected I had one. Also why we ruled it out.

Now I’m left with my English site and I have to be bit straightforward: I have a very mild lupus. Bad news in bad time, but usually no one asks you when you want to receive such news.

WHY SHOULD I BE HAPPY WITH THIS DIAGNOSIS?

it’s a skin type. I don’t have to worry about kidneys, and eventually most of the organs, shutting down. Just about skin. Yay!

the treatment doesn’t involve steroids, but antimalarial meds. At least at the moment.

it’s been in me for years. A real pain in the ass. Now I have a chance to improve some things in my health.

I’ve not been that sure whether the kind of lupus causes strokes. But if so, treatment must help to prevent next strokes. Yay!

Because I’m having like very very very minor symptoms. Lupus is there, but it doesn’t bring any threat I wouldn’t know about.

I don’t have to search for the causes of allergy for the sun, rashes, hair falling out, swollen lips… I have it in one diagnosis!

Luckily, there are two or three benches outside. Some of us are sitting, rest is treading water.

I’m just in front of the office for disabled people. Sitting and watching people. Having a place to rest, I’m one of more fortunate. Everyone who came later isn’t that lucky. There is the small crowd, louder and more nervous every minute. People standing seem to be even more upset.

Suddenly, doors are opening and the fresh face rush towards them. „Excuse ma’am, we are all waiting!”, people are protesting. „Well, we all just want the forms!”

But yelling doesn’t seem to be finishing. The woman who succeeded in unleashing anger still wants to keep her sense of dignity. She yells a bit, insulting others. Insulting us on her way out. I’m sure that if she could, she would slam the door. To elevator.

I’m still sitting and I’m scared. Disabled in front of my face change, they come into and out the small cabinet. Some them by „taking the forms” really meant „taking the forms”. It’s my turn. I’m scared to death and become numb. Being unable to speak, I can only look and try to spell out words and feel like a hunted small animal. I regret not taking my mum. I really do. Continue reading

Easter is coming. I want to wish you everything which is good, but that later. If i tell you now, you will not read the important part (( ;

Lately I’ve been spending hours a day talking to one guy;) Sometimes it even sounds feels like a confession – well, since i don’t go to the church, maybe it’s needed. I talk about problems that I’ve been discussing here for past two years too.

Another 4 days in hospital and… The cause of my stroke is found. Carotid artery dissection. Hooray!

As you may know, I’ve had millions of checkups of millions of things, I’ve been visiting doctors patiently for the past two years and increased my actions in this field after second stroke. And finally! FINALLY! Some doctors decided to send me to angiography.

And angiography showed a problem. It was conducted by brilliant specialist in the best Polish hospital (I have to thank my friends and my luck here)… But I didn’t expect much. Really I didn’t. I had just slight evidence that this procedure is needed.

My first angio CT scan didn’t small aneurysm or something like that. Something to be controlled, not to be removed.

When you are disable nothing can cause bigger frustration. I’m somehow certain.

If you don’t walk well, stairs are effective tool of keeping you from the world. They are barier bigger than kerbstones and, I’m somehow convinced, they are boat problem of people worth disabiliTy in the movement area. Living on the first floor without elevator can be disaster which doesn’t let you do anything outside. You can’t go to doctors, for shopping or anywhere workout external help. So simple and so tragic.

I remember learning to walk the stairs after first stroke. There were few conditions under physiotheraposts were willing to take me to stairs. One: I must have been stable enough. Second: I must have been asegúrate at all times. Going alone was out of discussion. And it’s good to ask for help. Believe me, for own comfort and security, it’s better to be assecurated.

This video has been online for few years, but I’ve seen it just recently. Maybe someone else haven’t watched it:

You don’t need to listen to what she says to see her face dropping, understand that she is struggling with the hand. She talks about other things too. For example about feeling numb. Or about the fact, that she had been released from hospital just recently.

She recorded the video to show her doctors what was her problem before symptoms were gone. Quick reaction and taking the phone can seem bit funny, but it helped doctors to diagnose her with three TIAs. Without video they thought that she was feeling badly from being tired or something like that.

Stacey Yepes was driving home (i had TIA behind the wheel too). Now she says that she keeps receiving messages from friends and strangers, that this vid helped someone to recognize a stroke. Continue reading

Right now only in English, but the website is going to be translated to other languages (including Polish, that’s great news for my Polish readers;) The morethe better i guess. I think the site will be available for more than English speakers:)

THE WEBSITE HAD IT’S LAUNCH, BUT WILL BE UPDATED.

For example next questions are waiting to be answered. You may remember that we (me and you, my readers) submitted some questions too.

To tell the truth I’m certain that the website will do many good things researches show people know about spasticity less than they should. Often they don’t even know what they are suffering from. This website is a first place online (I’m certain for like 99,99999999%) that collected important all basic and lot of non-basic data about spasticity. Actually it helped also me, and even before i wouldn’t call myself ignorant in this matter. Continue reading

I left neurology ward and I’m both happy (because it’s good to be back home) and unhappy, very, very, very unhappy, as nothing, again nothing is found. Nothing that can cause stroke(s).

Nothing. Healthy woman. I just keep stroking every two years. Does it really happen?

I feel like a patient who’s had the most diagnostic tests in Poland when it comes to brain strokes. Loads of money, many people we know in different useful places and bit of luck havent helped me to find the cause of my stroke.

There are few checkups I have in mind. we can conduct that. And visit at endycronologist and rheumatologist. And my blood was taken to check extremely rare genetic condition. There is a chance like 1 to milion(s).

But the fact is: when there is effect, there must be also the cause. Continue reading

exercising stimulates producing new cells in hipocamp. Hipocamp is very, very important, as stimulating it is improving our long term memory.

So. Three things so useful for stroke survivors. I believe all of these:) If we want to be happy, feel better and focus better, and have better memory, invite someone for a long walk. Well, tommorow I’m gonna start the day with my x-trainer;)

My new friends (usually from Internet) ask me frequently what is the treatment for stroke. I always tell them that we don’t know magical cure for brain stroke. There isn’t anything which can give us back damaged brain. The best treatments are, at least I think so, taking general care of yourself, exercises for both brain and body, physiotherapy… Anything which helps you to regain lost functions.

BUT! Look here!

„Researchers from the University of Manchester have developed a new treatment that could limit the damage caused by treatment for stroke and also promote repair in the affected area of the brain. What’s more, the drug they’re using has already been clinically approved”

Doesn’t it sound brilliant?

According to this article researchers notices quicker neurogenesis in areas damaged by post-stroke treatment, but also by stroke itself.

Some of lab mieces even regained motoric abilities! The question is then whether results of the research will be published in prestigious title& weather these will be confirmed.

So far the article and results of tests gave me a big smile for a day. I dream about cure for stroke. Not even for myself, my body&mind&life quality isn’t that bad, but if i had a chance I’d go for clinical trial;pBut there are people much sicker. without ability to walk, or talk, or smile, or sit, or grab, or see, or with huge spasticity… This med would be so greatfor our community!